Does Not Work for Me Wednesday: This does not work for me

‘Idál (Justice), 7 Núr (Light), 171 BE - Wednesday, June 11, 2014 about 7:27 am Pacific Daylight Time

It does not work for me when you refer to momentary memory issues a A Touch of Alzheimer's. I find this reference offensive because I have dealt with someone who suffered from Alzheimer's disease and I know the devastation it can cause to the sufferer and the family. I you think you may have a problem with Alzheimer's or some other form of dementia then ask your doctor for a referral to a geriatrician or neurologist, either of which are capable of determining if you are suffering from the early stages of these diseases.

I realize that you do not intend to be offensive when you use A Touch of Alzheimer's in a conversation, but the comment is offensive none the less. I watched my gentle and beautiful mother waste away from this disease. I felt her hit me when she got angry, which is something she never did before the disease begin to eat away at her memory, emotions, and personality. So please consider the feelings of those who have had personal experiences caring for family members suffering from Alzheimer's disease and do not use the term lightly in a conversation.

Hand-me-ups a new phenomenon in my household

Istijlál (Majesty), 12 Qudrat (Power), 169 BE – Thursday, November 15, 2012 about 1:05 P.M. Pacific Time

I am the oldest of four children. I have one sister and two brothers, so I understand the concept of hand-me-downs. When I grew out of my clothes, they passed to my sister. When the older of my two brothers out grew his clothes, they passed down to my youngest brother.

Since the doctor diagnosed my mother with Alzheimer’s disease, I have experienced a new phenomenon, which I call hand-me-ups. My mother forgets that she has eaten and thus thinks she has not eaten. As a result, she began gaining weight, which was all right at first because my mother’s weight went down to 95 pounds. My mother has outgrown her clothes, so now I am giving her some of mine. Instead of handing the clothes down to a sibling, I am handing the up to my mother; therefore, I call them hand-me-ups.

Mom, we have indoor plumbing

Istiqlál (Independence), 18 ‘Ilm (Knowledge), 169 BE – Friday, November 2, 2012 about 10:35 A.M. Pacific Time

This morning, after I got Mom out of bed and into the living room, she asked to go to the bathroom. Before taking her in the bathroom, I had to put the Gate belt (this is the belt I use to help transfer to from one piece of furniture to another) on. Next, I took her walker into the bathroom because I need it to help transfer her from place to place. After that, I took Mom into the bathroom and got her situated on the proper piece of equipment.

Mom suffers from Alzheimer's disease, which affect her memory and her emotions. Mom go angry and kept insisting she wanted to go to the bathroom. I explained that we were in the bathroom and also about the toilet. She kept insisting that we were not in the bathroom and that she was not sitting on the toilet.

"Mom," I said, " where do you want to go?"

"Outside," she replied.

That is when I realized that Mom thought we had an outhouse rather then an indoor toilet. I said, "Mom, we now have indoor plumbing." It took me a while to convince her that we did not need to go outside to find the bathroom, but eventually she accepted the fact. However, I am now convinced that Mom thinks she still lives on a farm in Oklahoma. Mom was born and raised on a farm, so this belief makes sense when I consider that she is slowly forgetting the present.

Tuesday Thoughts on the first of Ilm

Fidal (Grace), 1 Ilm (Knowledge), 169 B.E. - October 16, 2012 about 10:00 A.M. Pacific Time

It is the first of Ilm (Knowledge) and I am home alone. Mom is at the adult daycare center where I think she is having fun. When Mom comes home from the daycare I usually ask her what she did, but often she cannot remember. That is the way Alzheimer's disease works, it devastates the short-term memory. It does other things as well, but the short-term memory lose is the most obvious.

Tonight when Mom goes to bed I will turn on the oxygen compressor and put it on her. I do not know how long she will keep it on, so I will have to check every hour or so. In addition, to the oxygen I have to wake her up about 8:00 P.M. and give her a pill. I know the meds can just do so much; eventually the Alzheimer's will take my mother from me.

I want to cry, but I am not sure it would do any good. Crying will not bring my mother's memory back. Crying will not stop the spread of the disease. Crying may help me deal with my emotions for a little while, but eventually I have to accept what is waiting in the future. Eventually I have to accept the loneliness, some of which I am feeling now. I feel lonely because I cannot carry on an intelligent conversation with my mother. The only thing I can do is put everything in God's hands and do what I can do to make Mom as happy as she can be under the circumstances.

The Last Monday in September

Kamal (Perfection), 17 'Izzat (Might), 169 B.E. - Monday, September 24, 2012 about 9:11 A.M. Pacific Time

It is the last Monday in September 2012 and there are three months left on the calendar. Today, the daycare bus is late  picking Mom up. Mom is all ready to go, I have given her all the meds she takes at home. She had a bowl of cereal when she took them and now she is sitting in her wheelchair waiting for the bus.

It is the last Monday in September and I have that autumn feeling. I miss the woman my mother was before the Alzheimer's disease devastated her memory and her emotions. Right now, Mom is in a good mood. She is not crying and she wants to get out of the wheelchair. I do not know what she wants to do because all she says is that she wants to get up. I wish Mom could get out of the wheelchair and walk on her own.

I am hungry, so I need to go fix me something to eat. Sometimes I eat cereal with Mom and sometimes I wait until after she leaves for the daycare center to fix me something to eat. However, I cannot leave Mom alone in the living room for more then a few minutes because she wants to get out of the wheelchair. Mom has difficulty getting up using the walker and with help from me or someone else. However, she does not understand or remember this.

Is my mother laughing or crying

Jamal (Beauty), 16 Izzat (Might), 169 B.E. - Sunday, September 23, 2012 about 9:10 A.M. Pacific Time

I listen to my mother's voice. I listen to the noises she makes. I hear her begin to cry, so I ask "Mom, why are you crying?" Her answer, "I'm not crying." I don't  say well it sounded like crying to me. Instead, I watch her face and realize that she isn't crying, but instead she is laughing.

Mom has Alzheimer's disease and she cries about almost everything that disappoints or upsets her. When I ask her why she is crying she usually answers "I don't know!" or "I have a right to cry!" In either case I never find out why she is crying. Earlier this morning, I heard Mom was crying and went into her bedroom to find out why. I never did discover a reason for the tears, so I got her up and we came into the living room.

A while ago, I heard what I thought was crying; however, when I looked at her I realized she was laughing. When Mom starts to cry or to laugh the vocalizations she makes are  the same. The only difference, I can see, is that when she cries she sheds tears.

I call my Mother Marie

Kamal (Perfection), 10 'Izzat 169 B.E. - Monday, September 17, 2012 about 8:52 AM Pacific Time

I wasn't raised to call my mother by her first name. I've always called her Mom, Mother, or Mommy, but her Alzheimer's disease has changed the way I address my mother. Sometimes I call my mother Marie because she forgets that I'm her daughter. Sometimes she forgets my name and sometimes she remembers. I don't know who she thinks I am at these times.

Mom hasn't been answering my questions or responding to me consistently when I talk to her. At first, I thought the problem was that she didn't hear me, but that's only part of the problem. The rest of the issues is the damage the Alzheimer's has caused to her brain. I've noticed the when Mom wakes up in the morning or after a nap. I finally figured out the problem, Mom doesn't know who I am, so when I call her "Mom" or "Mother" she doesn't  realize I'm talking to her. When this occurs I call Mom "Marie" and she will respond.

Monday Meditations: Cloud Shapes

Kamál (Perfection), 3 ‘Izzat (Might), 169 BE – Monday, September 10, 2012 about 5:30 PM Pacific Time

I look out my living room window and I watch the clouds. One of the clouds has the shape like a giant prehistoric bird. Another looks like a dragon flying across the sky. As they move toward the west, toward the sunset they change shapes. One cloud looks like the head of a pig and another like a fish.

Watching the clouds change shape as they move across the sky is calming. My mind becomes tranquil as I watch their shape morph from one creature to the next. As I watch them, memories of my childhood return, memories of Mom and me sitting in the porch of our house in Blackwell, Oklahoma. We sit and watched the clouds change shape on a late summer afternoon. We commented on the shapes we saw in the clouds.

This afternoon, as I look out my living room window and watch the clouds changes shape I miss the days when Mom’s mind was sharp. I miss the days when Mom and I could have an intelligent conversation about the shapes of clouds. I miss the woman my mother was before Alzheimer’s disease robed her of her memory and ability to hold a conversation about one subject without becoming distracted. I watch the clouds and pray that someday medical science will find a cure for Alzheimer’s disease.

Alzheimer’s disease: A Caregiver’s Saturday Mo

Jalál (Glory), 13 Asmá’ (Names), 169 BE – Saturday, September 1, 2012 about 11:05 AM Pacific Time

It is Saturday morning; I have fixed Mom her first breakfast and given her all her morning meds. For her first breakfast Mom at sliced strawberries and banana. I am not sure what I will fix for Mom’s second breakfast perhaps scrambled eggs and toast or maybe a bagel, all though, Mom might like dry cereal and a jelly sandwich.

This morning, Mom and I discussed what she would like me to call her. I was calling her Mom, but she never answered me. At first, I thought it was because she was having difficultly hearing me even with her hearing aids in her ears. The problem was not Mom’s hearing difficulty she was hearing the question. Mom did not realize I was talking to her because she had forgotten I am her daughter.

After a bit of discussion, we settled upon Marie. Marie is my mother’s first name. From now on I have to remember to call her Marie, at least until she stop answering me when I address her by that name. I suppose then I can go back to calling her Mom. I do not feel like crying because this I expected to encounter this issue.

My mother has Alzheimer’s disease. I understood that she would eventually forget who I am. Mom will eventually forget a great deal more. It is sad that such a wonderful woman as my mother will forget her children, grandchildren, and great grandchildren. It is sad that two of Mom’s grandsons and her great grandchildren will never know the wonderful woman she was before Alzheimer’s disease began destroying her memories.

Care giving: Cleaning out Closets Day 2

‘Idál (Justice), 3 Asmá’ (Names), 169 BE – Wednesday, August 22, 2012 about 5:25 PM Pacific Time

There are three bedrooms in this house and each one has a closet. I found some more of Mom’s clothes in another closet. I also found some of my clothes that I either never wore or have not worn in ten years. In one closet, I found two formal dresses. One belonged to Mom and the other to me.

The one that belonged to Mom is too small for her and she has not worn it in at least ten years. I put Mom’s in the group of clothes I am giving away tomorrow, but I am having second thoughts. I doubt that Mom will wear the dress again; it is dark blue with a broach. Mom had two formal dresses the other one pink and I left the pink one in her closet.

I think she can still wear the pink dress. In addition, Mom likes bright colors better then dark colors. If I gave her, a choice she would chose the pink over the blue. I think I feel guilty about giving Mom’s clothing away without asking her, but if I ask, she will want to keep everything; including the dresses that are too small and there just is not enough room in the closets to keep everything.

Caring for someone with Alzheimer’s disease is difficult. I keep encountering situations in which I have to make decision that I sometimes suspect would be different from the decision Mom would make if she were still capable of making them. I cannot keep all the dresses that are too small for Mom and I probably did not give away enough, but I can still set other things aside to give away.

The Changes in my Life: Watching the Summer Olympics

Fidál (Grace), 19 Kalimát (Words), 169 BE – Tuesday, July 31, 2012 about 6:10 PM Pacific Time

Many things have changed in my life since the last summer Olympics. Mom has Alzheimer’s disease and does not want to watch the Olympic Games with me. At least, I think the issue is the Alzheimer’s disease. I always enjoyed watching the Olympic Games with Mom and Mom used to enjoy watching me.

I have not watched the Olympic Games much this year. I did not watch the opening ceremonies and when Mom watched with me, we always sit on the couch and watch the opening ceremonies. The few competitions I have watched I do not enjoy the way I used to when Mom watched them with me. I will attempt watching them again on Wednesday, but it just is not the same. I miss watching them with Mom.

This experience got me to thinking about some of the things Mom and I used to do together. I missed the things Mom and I enjoyed, but I am not sure I want to do them without her. I know the reason Mom acts the way she does. I know that she will only get worse and I want to cry because I miss the woman that my mother used to be. Maybe I need to focus more on the things Mom enjoys now. Maybe I need to find activities that I can enjoy by myself.

Sometime I wonder: Thoughts about Alzheimer’s disease

Kamál (Perfection), 11 Kalimát (Words), 169 BE – Monday, July 23, 2012 about 4:20 PM Pacific Time

Sometimes, when I am talking to Mom I wonder what she is talking about; this afternoon for instance. Mom came home and she was in a grumpy mood. She ask why she was locked in. However, she was in her wheelchair and was unlocked. She could have been referring to the way we secure the wheelchair we when she is in the van. She could have been referring to something that happened in her childhood. She could have been referring to a dream or an illusion. I have no idea.

Sometimes, I wonder if Mom thinks she is talking to me (her daughter) or to her mother. I know that sometimes, especially when she wakes up from a bad dream she thinks I am her mother. When Mom needs something in the middle of the night, she usually calls me by my name. There are times, when she does call for her mother and when I go into her bedroom to see what she wants, she acts as if I am her mother.

The Alzheimer’s disease is the problem. She does not remember that her parents are dead. She still wants to see them. Another thing is that Mom does not realize where she is living. Sometimes, she asks when she is going home. There is no use informing her that she is home because Mom insists otherwise. At these times, I just tell her tomorrow. Mom forgets she ask the question and the next day she is worried about something else.

The clouds are rolling into Las Vegas

Jalál (Glory), 9 Kalimát (Words), 169 BE – Saturday, July 21, 2012 about 4:15 PM Pacific Time

The clouds are rolling into Las Vegas. I have not been outside since I rolled the trashcan back to the garage after the garbage trucks picked up the trash this morning. I know the humidity is up because I can see the clouds, but I do not know how much humidity or how high the temperatures. I have not been watching the local news today or the weather channel. Today I am watching CNN or MSNBC. Right now, I am watching CNN.

I am not ready to write why I am watch CNN or anything about what happened in Colorado. I am still attempting to process the information. Eventually, I will be able to process what I am hearing and then I will write something about. It will either be a blog entry or a poem; probably a poem, but for now I am focusing on the news, the local weather, and what to fix Mom for dinner. I know that is an odd reaction, but if I let myself focus completely on the shooting in Colorado I will cry, which is something I cannot let myself do in front of my mother.

I am not sure how much Mom will comprehend. If I mention Colorado, Mom is going to worry about my brother and his family. There is no use upsetting Mom about them or anything else in her condition. Mom’s Alzheimer’s disease has affected every aspect of my life. Before I tell her about anything or put the hearing aids in her ears on the weekends, I consider what she may hear on the news. She has her hearing aids in now and the news does not seem to be affecting her, so I do not know how much she understands about what is going on.

Today’s Senior Moment in Las Vegas

Istiqlál (Independence), 1 Kalimát (Words), 169 BE – Friday, July 13, 2012 about 4:20 PM Pacific Time

I had a Senior Moment earlier this afternoon and it scared me. All right, I am 65 and I can expect a Senior Moment now and then. However, this one really shook me up. I was doing a survey and forgot my age. I could remember the year I was born, but not how old I was on my last birthday. I could also remember the date of my last birthday.

Since I needed to know my age for the survey, I used the calculator on my cell phone to figure out my age. I do not think there is anything to worry about now, the momentary memory lose was just a brain hiccup ... an attack of “C.R.S.” I did remember how to use the calculator. I did remember the year I was born (1946). I did remember that my last birthday was December 24, 2011.

I think the best way to handle today’s little memory lapse is not to worry. I doubt that it is an indication of Alzheimer’s disease. It is probably an indication stress or of nothing at all. Everyone has memory lapse now and then. These memory lapses normally do not mean anything except stress. I need to take a deep breath and laugh.

I hear Mom crying

Kamál (Perfection), 2 Rahmat (Mercy), 169 BE – Monday, June 25, 2012 about 7:10 PM Pacific Time

I hear Mom crying,

so I get up and go check:

did she have another dream?

It’s going to be another sleepless night. There is no use going to bed, so I’ll lye down on the couch or the love seat. I don’t sleep well, listening for Mom. Sometimes it’s her tears; I strain to hear her crying in her sleep or when she wakes up from a bad dream.

It’s the Alzheimer’s disease. Mom can’t tell the difference between a dream and reality. She has a dream and she thinks it’s real. She reacts to the dream as if it were real. Sometimes her reactions to the dreams are amusing. Sometimes they make me cry.

Anyway, I get up. I go into her bedroom and I attempt to calm her. I attempt to reassure her that I love her. If this doesn’t calm her then I give her something for agitation because she needs the sleep. I know this is a symptom of Alzheimer’s disease.

I hear Mom crying,

so I get up and go check:

“Mom, I love you!”

An Alzheimer’s Morning: “Oh, no!”

Istiqlál (Independence), 11 Núr (Light), 169 BE – Friday, June 15, 2012 about 9:50 AM Pacific Time

It’s an Alzheimer’s morning; this is how I refer to it when Mom is upset, crying, angry, or agitated and this morning, she is crying and saying “Oh, no!”

“Mom,” I ask her, “what are you crying about?”

“Nothing,” she replies or “I don’t know.”

Mom begins crying and then a few minutes later, she says “Oh, no!”

Again, I ask, “Mom, what is wrong?”

“Nothing,” she replies. I fix her a bowl of dry cereal and this stops the crying for a few minutes, but again she says “Oh, no~” I adjust the dolls on her lap; however, this doesn’t seem to help.

The “Oh, no,” conversation could go on all morning or all day. I can’t get may to why she is upset because she doesn’t know herself. I’ve gen Mom all her morning medication, including the pill for agitation. I don’t know what else to do.

Mom moves the wheelchair with her feet. She tries to leave the room. I ask, “Mom, where are you going?”

“Anywhere,” she replies.

I pull the wheelchair back to the couch. Fortunately, if she tries to open the front door, the alarm system will say, “Front door open.”

The hospice C.N.A. came to give Mom her bath. Then about ten or fifteen minutes later, the bus from the daycare center picked her up. By the time the van got here, Mom was in a good mood and wanted to go outside. She didn’t cry or get upset when the driver pushed her wheelchair to the bus.

My mother thought her pills were apple seeds

Istiqlál (Independence), 4 Núr (Light), 169 BE – Friday, May 8, 2012 about 7:35 PM Pacific Time

Mom takes medication better in the afternoon then the morning. In the afternoon, I can put the pills in my mother’s hand and she will put them in her mouth and swallow them. In the morning, Mom doesn’t want to take her meds. I have begun putting them in applesauce because she normally swallows without a problem.

This morning, I put one of the meds in a spoon of applesauce and she tried to take it out of her mouth. I ask her not to, but she said it was a seed. I finally convinced her it wasn’t a seed. Once she was satisfied that the pill wasn’t an apple seed, she swallowed it without any trouble.

I like to use applesauce because it is easier for Mom to swallow. After I give her the applesauce, I give her a glass of water and most of the time she drinks the water without any difficulties. If Mom continues to think the medication is a seed, I don’t know what I’m going to do. I suppose I’ll have to find something else to hid her medication in so she will take it. Taking care of someone with Alzheimer’s disease is interesting.

I want Momma to stop crying

Istijlál (Majesty), 15 ‘Azamat (Grandeur), 169 BE – Thursday, May 31, 2012 about 4:45 PM Pacific Time

I want Momma to stop crying. I want her to be the happy and independent woman I knew before the Alzheimer’s disease began its destruction.

I want Momma to stop crying. Sometimes the pills help. Sometimes sitting beside her and holding her hand helps. Sometimes sitting beside her and reading the Long Healing prayer helps. Sometimes combinations of the above methods help.

I want Momma to stop crying, but sometimes nothing helps. It is at these times I want to sit beside her and cry with her. I cannot do this because it would only make her more upset. Mom would not understand why I was crying any more then she could tell me why she is crying.

I want Momma to stop crying. On rare occasions, Mom can tell me why she is crying. Sometimes she misses her parents because she does not realize they died years ago. She does not remember attending their funerals. Sometimes she misses her husband because she does not remember the divorce. Sometimes she wants to go to work because she does not remember retiring.

I want Momma to stop crying. Sometimes Mom believes someone stole her clothes. Sometimes she believes someone stole her glasses. Sometimes she believes that everyone hates her. Sometimes she thinks I am her mother. Sometimes she remembers I am her daughter.

I want Momma to stop crying. I want Momma to be happy again. I want to hear Momma sing her favorite songs. I want to see Momma smile again. I want to hear Momma laugh again.

An Interesting Tuesday Morning in Las Vegas

Fidál (Grace), 18 Jamál (Beauty), 169 BE – Tuesday, May 15, 2012 about 8:10 Pacific Time

It’s been an interesting Tuesday morning and it isn’t even 8:30 yet. Someone called the police because Mom was screaming and putting up a fuss when the C.N.A. gave her the bath. The front door was open so it probably sounded worse then what it was. Now I suppose I’ll have to keep the front door closed while Mom gets her bath Monday through Friday.

I guess this is something I have to learn to expect. Mom has Alzheimer’s disease and she gets angry when some (even me) gives her a bath. Some days she gets angrier then others, but she always gets angry. She accuses whoever is gives her the bath of attempting to kill her. I want to cry, but it would do no good.

This is a case when tears, no matter how many, help. They do not relieve the stress. Tears only make the situation worse because when I cry I remember how Mom used to be. Used to Mom didn’t curse, she didn’t shout at people, and she didn’t call people names. Now she does all those things, especially when she receives a bath. I miss the woman my mother used to be.

Easter Traditions and Alzheimer’s disease

Jamál (Beauty), 19 Bahá (Splendor), 169 BE – Sunday, April 8, 2012 about 1:35 PM Pacific Time

Every Easter Mom and I each eat a chocolate Easter bunny. This is a tradition we’ve practiced for at least the last twenty or twenty-five years. Sometime between April 1 and Good Friday, I buy two chocolate Easter bunnies. This year I bought us solid chocolate bunnies instead of hollow bunnies.

After I bought the bunnies, I placed them in the refrigerator. When I buy the hollow bunnies, I place them in the freezer until Easter morning. On Easter Sunday, I make a carafe of fresh coffee and then Mom and I eat the bunnies for either breakfast or lunch. This year we ate them for brunch, with fresh hot coffee.

I opened Mom’s bunny and gave it to her. She looked at the chocolate and asked me “How do I use it?” At that moment, I realized Mom had forgotten our Easter tradition. It was upsetting and I wanted to cry, but instead of crying (Mom wouldn’t have understood why I was crying) I explained to her that she could eat the chocolate bunny.

Mom ate her bunny. During the process, she got chocolate all over herself. She had chocolate on her face, hands, and dress. This is the first year Mom got chocolate all over herself when she ate the bunny. I’m not sure whether Mom got the chocolate all over herself because it was a solid bunny or because of the progression of the Alzheimer’s disease. Perhaps next year I will go back to buying hollow bunnies.